An important research partnership involving Parkinson’s UK, pharmaceutical company UCB and the Parkinson’s Foundation has published their first results in a study designed alongside people living with Parkinson’s.
The study aimed to find a way to meaningfully record people’s experience and progression of their symptoms early after diagnosis. The researchers did this by interviewing 59 people and the results were published in the journal of Neurology and Therapy.
Current tools used to capture symptoms and progression of Parkinson’s are limited, especially when capturing the subtle differences, and experiences, of people early on.
Giving everyone a voice
6 people with Parkinson’s helped design the study and had input at every stage of the project. Part of this was making sure that the most meaningful questions were included in the interviews that asked people about their experiences.
The opportunity for people living with Parkinson’s, their friends, family and carers to answer these questions was then circulated by the Parkinson’s Foundation and the Parkinson's UK Research Support Network. From the 59 responses collected, the group saw that some of the main concerns of people with Parkinson’s who were recently diagnosed varied from those which traditionally have been reported.
What were the results?
The results showed symptoms such as slowness of movement, fine motor skills (such as holding a pen), and subtle changes in gait or walking, had the most impact on people who had been newly diagnosed. Read the full results of the interviews.
The group plans to use this information to improve the tools that are used to help healthcare professionals understand how a person is feeling, and the symptoms they may be experiencing.
Nikul Bakshi, Research Involvement Manager at Parkinson’s UK, said:
"By involving people with Parkinson’s from the inception of the project, the group made sure that the results were meaningful and will pave the way for better reporting in future trials.
"This partnership is part of a greater commitment we have to make sure all Parkinson's researchers work collaboratively with people with Parkinson’s and their loved ones as much as possible. All researchers applying to us for funding are asked about their plans for patient and public involvement."
Carroll Sui, a patient expert in the group, said:
"Involving patients in research is a symbiotic partnership; this is very much the case in my experience in working with UCB.
"Right at the onset, this partnership had been a two-way process. The nurturing and guidance from UCB in the last 5 years has allowed me to gain knowledge, skills and confidence, which I can now transpose to my engagement in future research projects.
"The future is bright and I have hope for more successful research in finding a cure for Parkinson’s."